Another Twist in the Saga of Henrietta Lacks

By THE EDITORIAL BOARD

August 10, 2013

When Henrietta Lacks was stricken with an aggressive cancer more than 60 years ago, doctors who treated her at Johns Hopkins Hospital in Baltimore took cells from her tumor without her permission or knowledge, as was common practice at the time. They soon learned that the cells were just as aggressive in a laboratory dish. Instead of dying quickly as previous cell lines had, they kept replicating at an astonishing rate, earning them the label “immortal” and making them immensely valuable to any scientist who wanted a stable base for experiments.

The cells, called HeLa cells, are ubiquitous in labs around the world and have been used in more than 74,000 research studies on almost every disease. The cells have helped researchers develop a polio vaccine and gain insights into cell biology, in vitro fertilization, and cancer, among other advances.

The enduring constant in this saga has been the cavalier treatment of the Lacks family by medical researchers. Neither Ms. Lacks nor others in her family were told that extracting cells from her tumor (and later taking cells from some of her relatives) was not being done for their benefit but for the benefit of science.

That condescending attitude changed last week when the National Institutes of Health announced an agreement with the Lacks family that will restrict N.I.H.-financed research on the genome of HeLa cells (not the use of HeLa cells in experiments) and place two family members on a committee to approve such research. The family was especially concerned that publishing the full genomic sequence of HeLa cells would violate its privacy by revealing abnormalities in genes that could be transmitted to later generations. Although the deal does not apply to projects not funded by N.I.H., the agency hopes all researchers will honor it.

The agreement with this atypical family should not set a precedent that would allow the descendants of someone who voluntarily and knowingly donates tissues for research to restrict how they can be used. In virtually all cases, the wishes of the donor should prevail.